The Dilemma of a Dual Diagnosis - Daniel's Story

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Daniel listens to Eritrean music and rocks to the beat as
his father keeps a close eye on him. Taddese Ghebrekidan has watched over his
son for the past 20 years. “I knew there was something wrong with Daniel but it
was hard to confirm,” says the soft-spoken father. “There were signs of trouble
early on. But we just didn’t know where to turn to for help.”

“We kept expecting him to say a word but he just never did.
He tapped his fingers and was afraid to go to unfamiliar places,” Taddese
remembers. “We took him to several doctors and he had hearing tests, CT scans
and MRIs but all the tests were negative. We never heard the word autism.” But
that was eventually Daniel’s diagnosis. He was later diagnosed with epilepsy
and pica, which gave him a constant craving for non-food items like dirt or
paper.

A respiratory therapist by training, Taddese could no longer
keep working in his profession because looking after Daniel became a full time
job. And as Daniel got older, he became more physically aggressive and prone to
outbursts. “We would wait and hold our breaths every night wondering if it was
going to be a good evening or not. Daniel became very strong so it became a
safety issue for myself and my wife.”

Daniel with his father Taddese on a recent
visit.

The around-the-clock supervision and care his son required
took a toll on Taddese and his wife both physically and emotionally. He tried
to find a group home for Daniel but with no success. “We tried to use respite
services but the reality is that for someone like Daniel, there are no
programs, no place for my son to be safe, to get help.”

In one frightening incident, Daniel became violently ill and
was admitted to hospital where surgeons discovered he had a bowel obstruction
due to four latex gloves he had ingested earlier. And then the turning point
came when he was admitted to CAMH.

Daniel represents a prototype of young male referrals coming
from families rather than group homes which is a newer trend, says Dr. Pushpal
Desarkar, a physician with the Dual Diagnosis Program. Families are reaching
out for help because there are no appropriate community placements for their
children. “It can be a burden on many families because there are very few
places that can support Daniel because there is more than one diagnosis to
consider and treat. He has aggressive behaviour and can be a danger to staff as
well as himself,” he says.

One of the main goals is to ensure staff feel safe because there
are some risks to caring for Daniel. “Supporting staff is just as important as
supporting the client because these are complex cases that can be
life-threatening and many of them walk through the doors of CAMH in crisis,”
says Dr. Desarkar.

Agnes Buabeng, is a part-time RPN who has worked with Daniel
from the first day he came to CAMH. “He has improved so much since he was first
admitted. He is less aggressive, shows less pica behaviour and seems to be more
calm rather than agitated,” she says proudly.

Part of Daniel’s treatment includes intensive behaviour therapy.
Instead of ingesting items, he has been taught to place them in a tool box. “Every
small gain is really a big reward,” says Dr. Desarkar. “Now he can go for a
walk with his father and they take the tool kit with them.”

After Daniel moved to CAMH, Taddese says he “could sleep for
the first time in a long time but it took a while because I was always waiting
for the phone call. I can finally breathe again and I’m happy he’s in a place
that understands him and where people are trying to help him.”

While Daniel’s story is heartbreaking, it is also indicative
of many clients with multiple diagnoses who have very complex needs but no
community support, says Dr. Desarkar. “They are underserviced because their
challenges are many and the system is not equipped to treat them in the
traditional hospital system. Many of these clients end up with simply no place
to go.”

Taddese visits Daniel three times a week, bringing him
homemade food and spending time together taking walks. While he has dedicated
his life to caring for his son, Taddese worries about what the future holds for
Daniel. “It has taken a heavy toll on me but the bigger concern is what will
happen to him when I die? Who will look after him? That is what is so
frightening for me.”

He hopes to find a permanent home for Daniel. “What I would
like for him is a safe environment where he could live with other people who
have similar problems. A place where he can get treatment but also not be
alone.” But for now, Taddese can sleep knowing his son is safe and getting the
treatment he needs.

Daniel hums along with his music as Agnes puts ketchup on
his potatoes because she knows it’s his favourite. She is thrilled with the progress
Daniel has made. “I dropped a glove once and I was so worried he would take it
and eat it,” she recalls, smiling widely. “But he surprised me because he
picked it up and gave it to me. I was so happy I gave him a high-five.”